Tuesday, December 29, 2015


      Whether it was launching a baseball from the warning track to the catcher, pinpointing a frisbee 75 yards to the end zone, or landing a fierce jab to the gut of a foe, I've always relied on my right arm. Even when it came to the easy stuff like brushing my teeth, holding my phone, lifting a pint of beer, my right arm always won out. 
      Now a days this is no longer the case. When ALS threw the kitchen sink at me it collided with the right side of my body. Tripping over my right foot is where this fight started and now it's turned me into a southpaw. Put a 50 lbs oven mit on your right hand and try to write an email or pick up the remote. That's what it feels like in my fingers and arm. My brain tells my arm to move but it stays basically motionless unless I whip out a killer shoulder shrug or move it with my left arm. 
      A fellow ALS fighter just wrote a blog where she shot down the idea that giving up independence might as well be a death sentence. I've struggled mightily at every point that I've had to concede and give up independence. Rocky had Mickey in his corner. I've got God in my corner as I'm training to become a southpaw (look it up). God does not promise ease; however, He does promise to never leave you or forsake you. It is this chapter of my life that has changed me. I've got a new fighting style. With new eyes and a new fist, I see the things that matter. I see and feel the Grace. This fight isn't even close to over.

Saturday, December 12, 2015

Ground Control to Major Tom

      Today is another transition in my life. A dude from LiftSystems is coming to install a ceiling track to help me in and out of bed every night, which will improve Chelle's quality of life quite a bit now that she won't need to lift my heavy ass. The thought of playing the Crane Game every night with my body has got me feeling strange if not introspective.
      It took me a long time to open up about my ALS and really communicate all my feelings, worries and anger that go along with it. Prior to opening up in these blogs and being true with my friends and family, ALS was tearing me apart on the inside. I was always a guy who kept my thoughts and feelings close to the vest, unless I had four beers or so, then my emotions would explode and usually make someone and/or me cry. 
      Knowing that one day this bullshiit disease may come after me and possibly my voice is all the more reason for me to be as clear, effective and purposeful with my communication. I don't have time to lie, to put on a front, or to internalize my feelings. I do however have time to tell you all how much I love you, how much I depend on the people in my bubble that make life as "normal" as possible for me. I do still have time to teach kids how to read and decode and how to add and subtract fractions. I do have time to answer questions about ALS, no matter how personal, to advocate for people like me. So keep the questions coming. I will speak "baby talk" to Arik Kristoffer when he is born in the coming days and blow raspberries on Abram and Allen's head. I will shoot you a glance in a meeting that says it all. I will toast your successes and 
comfort you in times of sadness. I will speak God's Grace. 

Friday, November 27, 2015


      Taco pie, chili, meatloaf, breakfast muffins, pot roast, lime chicken, quiche, chocolate crescents, pulled pork, cheesy potatoes, pork tenderloin, and lasagna. Mouth watering yet? Family and friends have stepped in over the last month to cook for us and take a portion off of Michelle's plate every evening. These meals have allowed Chelle and I time to enjoy one another over dinner and to relax with one another after long days of teaching instead of her worring about cooking.
      These days I have had trouble feeding myself if the meal isn't a finger food or is messy. I bring simple meals to work and have had to pass on some tasty treats when I'm not around people I feel comfortable asking to feed me. Eating may be my favorite activity, especially when it's paired with beer drinking. We went out for Mexican the other night and Chelle was an excellent chips and salsa assistant. Even when there are people who may not understand why my wife is feeding me and stare throughout my meal, I continue to smile and laugh. Their glances don't change the taste of my Modelo.
      Yesterday we made the trek to Oak Park to have Thanksgiving Dinner at my mom's house. She always goes all out and cooks everything with detail and deliciousness. Her gravy is so good I put it on my Jello. Cornbread, turkey, Jello, stuffing, green bean casserole, carrots, rolls, apple and pumpkin pie, brownies, all washed down with good German beer. I've feasted like a king over the last month, and though I physically haven't been able to stuff my face myself, the wonderful conversations, laughter and  love I've experienced during that time is  the definition of Grace. 

Happy Thanksgiving Everyone 

Wednesday, November 11, 2015

Grace's Future

      Earlier this week my Grandma Grahnke passed away after being ill off and on again for the last few years. She lost her husband a few years back and her son, my dad in 2006. Grandma was always kind, I guess all grandmas are, she loved us grandkids so much and loved talking to us on the phone and in person. She always remembered what we spoke about the previous time and would follow up, your needs always came before hers.
      Now that she's passed and I reflect about all these conversations we had over the years I've realized I don't know as much about her as I should. Specifically I don't know what she believed in her heart about what comes after our time on earth. I probably think about what comes next more than others do having ALS, and I'm glad I know what comes next and that's heaven. I talk about finding the Grace in the day to day and I can do this thanks to my faith in God. "For it is by Grace you have been saved, through faith--and this is not from yourselves, it is the gift of God."-Ephesians 2:8. When I think about where Grandma is now I picture her with my grandpa and dad together in heaven once more, but like I mentioned, I wish I knew for sure that's where she believed she would end up.
      Unless a miracle cure happens soon I know for a fact that I will leave this earth sooner than I expected. That sucks but I've made peace with it. What I haven't made peace with is the idea that some of my closest friends and family may not join me when I'm finally rid of this bullshit disease. 
I'm not writing this blog to cast stones or judge anyone, but I am taking the time to be selfish. Selfish because I don't want you crying at a gravesite thinking of how much you miss me when I go. I want you to pause and think about the good times we have ahead, the good times God's Grace can allow us, the good times we'll share in heaven. 

Sunday, October 25, 2015

Through the Windshield

      This morning before church Michelle and I lay in bed flipping through our phones. I was adjusting my fantasy football lineups when Chelle pulled up a Timehop photo of us from one year ago to the date where we were at the apple orchard. I was standing upright with the use of a cane and had my AFO's strapped to my ankle to keep me from tripping over my toes. 
      I began to think about how much has changed since that day. I knew I had ALS at the time, but things were different. I was able to dress myself, roll over in bed unassisted, cook, raise a pint of beer to my lips, write, get on and off the couch, shower myself, I even drove us to the orchard in my Civic. Those capabilities are all in my rear view mirror. I now need a straw to drink, wheelchair to move, assitive tech to adjust in bed, a shower chair, and a handicap accessible van to get anywhere. These losses wear on me at times and are accompanied by lots of cursing and tears. 
      $35,421.67. That's a heap of money. That's also the amount of money the Gronk's Grace Army has raised in less than a year for others like me fighting this battle and experiencing the same losses I have. I have rolled onto Capitol Hill to raise awareness and demand change from our representatives to help support PALS. We bought a house to call home, where friends and family can come and be loved. We brought home Wrigley, our dog who we call Son. I give all my nieces and nephews rides on my wheelchair. I started my seventh year teaching and am still teaching to this day. Friends, family and strangers raised over $25,000 in GoFundMe funds to support our needs going forward. 
      Even with the terminal diagnosis, the Grace I've experienced since that day back in October is such that all I can do is be grateful and keep my eyes focused on the windshield. Looking back through the tiny rear view mirror won't get me anywhere. The windshield is full of Grace. The future is going to be great because I know God is in control. I've let go and let God. 

Monday, October 12, 2015

Wakefulness Slumber

      I was cruising the streets of Oak Park in my '92 Oldsmobile Achieva on a bright blue fall day. Every tree was a different shade of orange, yellow and red, mixing well and smelling of soil. Cate and Rosie took over stereo duties and cranked some David Banner. The bass rattled as we cruised East Ave on our way to DiNico's Pizza. I was feeling 17 again, and then I felt a fire burning in my left foot, then it shot to my knee, my hip, DiNico's left my mind, Cate and Rosie vanished and I awoke with a silent, "son of a bitch," in my head. 
      This is an every night experience. I take solis in my dreams where I get to run, drive, climb, and dance, things I no longer get to do because of ALS. I escape this bullshit and enjoy the world in ways most people take for granted. These dreams however get cut short all too often with a leg cramp or growing pain. Imagine getting a Charlie horse but not being able to move to release the pain. I try with all my might to adjust my legs on my own without waking Chelle. She does so much for me during the day I want her to be able to sleep peacefully. I spend many hours awake, in pain, trying to think happy thoughts to make the pain subside. Shenanigans with friends, French fries, beer, boobs, running, Christmas, all go-to happy thoughts, and then I pray. I pray that one day this disease will leave me, and then my angel Chelle swoops in and rescues me, pulling me onto my side to eliminate the pain, once again embracing the Grace around me.

Tuesday, September 29, 2015


      In a recent sermon our pastor was discussing what heaven will look like based on what the Bible tells us. He spoke to how we use the word beautiful to describe things and people we find aesthetically pleasing. Before the concept of aesthetics even existed the Greeks came up with the word beauty or kalos, to explain God's greatness in early translations of the Bible. So if you think about it we definitely over use the word beautiful to describe things we find nice to look at it. 
      Living with a terminal illness like ALS is a mind fuck. I drive around day to day in my wheelchair focusing in on small details in the world around me that I never used to even notice and questioning why and how they came to be. When I dwell on that thinking and why I'm focusing in on such "meaningless" things I know that it's because I'm trying to avoid thinking about my immortality and End Day. Those thoughts consume you and makes it almost impossible to be happy, even with the faith I have in God.
     ALS brings darkness and dispare if you don't consciously make the choice to invite beauty into your life. You need to focus on the details. For me, I'm blessed because I have Michelle in my life. Her hair down to her toes are stunning and her beauty alone makes me see past my diagnosis. Her smile picks me up when I'm stressed, her laughter and silliness relaxes my nerves, her kisses give me strength. We watched the lunar eclipse together Sunday evening and were taken aback by the power and beauty the moon displayed. I noticed every swirl in the clouds, beams shining from the moon and warmth from Michelle's fingers intertwined with mine, and for the evening I forgot that I had ALS and was consumed by God's beauty. That's Grace.

Thursday, September 17, 2015

20,000 Thank You's

      I woke up Monday feeling like the Sahara Desert was in my throat and a waterfall of snot was dripping from my right nostril. The miserable cold that all the students have had latched onto me and wouldn't let me go. Sneezing isn't the same with ALS. I can't bring both my hands to my face to hold a Kleenex the same and blow a massive blow to dry up the waterfall which makes things even worse. Smash-cut to the end of the day. Brendan and I had just pulled into my driveway and I was driving down the ramp as I always do when, SKEHFIBRCH, crash, my entire wheelchair is on its side, my head is on the concrete and I've got 300lbs on top of me. Brendan with Hulk strength and Flash speed was able to pull me from the wreckage and flip my chair back upright. I sat there in my driveway, bleeding from my eyebrow thinking, "what the fuck just happened?!?"
      Brendan, my hero, was able to get me back in the chair and cleaned up, where we discussed how the heck a backpack strap could cause so much trouble, before he went home. My day started horribly and ended like a train wreck. But then, however, my spirits were lifted. I had and have been checking on the Gronk's Grace Team page religiously as the Walk approaches. And I saw names on my team that I couldn't believe were there. Friends I haven't seen since Boy Scouts, elementary school friends, ex-girlfriends, distant family members, all signing up and donating exuberant amounts of money for me. I took out a fork to eat my humble pie.
      The GoFundMe support was tremendous and I thank God I have those funds to tap into whenever I need it, but the Walk money feels different. Being a part of this Team makes me proud. So many people kicked so much ass to raise this money. Kids did community service and smashed their piggy banks for these donations. Friends from all across the country even on different continents helped spread awareness for ALS and  got their peers to donate. 500+ people did the ALS Ice Bucket Challenge. I opened up about my insecurities to total strangers on TV, at bars, the grocery store, to anyone that would listen. Gronk's Grace has spread like wildfire and the support we've all raised will help many in the community with ALS. I've called us a team, squad, gang, clique, but I think at this point we should be called an army. An army that I know won't quit and won't back down or retreat until a CURE is found. I've never felt so proud to be a part of something. To victory!

Thursday, September 3, 2015

A Poetic Snapshot of ALS

This comes from a guest contributor, my younger brother Kurt.

To Kris,


To dedicate an ice bucket challenge

Is to attribute so much more than 

A quiver in the spine.

It is so much more than a feeling,

A transitory sensation.

To dedicate anything to you

Is deeper than that.

It is more like being a root 

Among many beneath the earth

And you are the tree, an organism

With the purest cause.


Now like a tree

You reallare an organism

With bone, nerves and blood

Like the wood, limbs and trunk,

You are all those folded proteins

And chemical signals too.

You are the cells that wither within you

And you are the synapses that strengthen your thoughts.

You are this cascading system of physicality,

But you are also grace and courage unfiltered,

Which to me makes you an angel

If they exist – And why ask?

You are here.


But with sickness like this, I struggle and cringe.

It would make me sulk and draw within

Were you not there to hold those doors open.

So instead I ask: what is with the genes,

Which from the earth produce growth

But so to enact the degeneration

Down the generational line.

Did I luck out or am I only keeping

My doom at bay?

But as I pretend to sit idle

In a canoe as the orange water waves

Sway me,

My soul,

Set free.

I am comfortable

To know and know not,

Because you are and will always be



Saturday, August 29, 2015


      The 2015-2016 school year has officially started. It's the start of my 7th year of teaching special education and this morning has been the first time in two weeks that I've been able to hit pause and reflect. I caught up on Internet articles I saved, and cranked up the tunes in my Beats headphones. Specifically Hillsong United because they help slow down time. They're like a Swedish massage for the brain. I'm getting off track. The start of this school year has been different than any other I've had in my career. I may have been diagnosed with ALS last summer but I hadn't accepted it yet. This school year started and there was no denying that I have ALS. In my mind I struggled with the idea that maybe I'm biting off more than I can chew? What if my arms officially crap out on me like my legs did? What if my voice goes? My ability to swallow? After all I'm living with a terminal disease, am I going to be reliable enough to support these kids?
      I read an interview that was recently posted with Tim Shaw. Tim is a former NFL player, he's 31 years old and he has ALS. Tim is an inspiration for me. He openly talks about his faith and is truly living even though he's dying. In the interview Tim said, "I believe God makes us for a purpose. Sometimes God specifically says, This is what I made you for." Tim goes on to say that he knows God didn't plan for him to have ALS, but he prepared him for the tough road ahead. Tim spends his days using his famous reputation to help the needy in Brazil, coach football and traveling the world spreading God's love and fighting for others with ALS.
      God's purpose for me showed brightly yesterday afternoon. Any doubt I had about whether or not I should be in the classroom with ALS was blown out of the water when the Gronk's Grace squad united for the biggest Ice Bucket Challenge in IL history. 480+ kids and some 25 teachers soaked themselves to support the ALS community and to rally behind me. Sometimes God shows his Grace softly and cryptically and other times his Grace kicks you in the face. This time around it was a kick in the face. With the tremendous love and support I received from my Whitman Post family I don't have time to dwell on the What If's? I will fight like hell to keep advocating for those in need and use this inspiration to share God's love and grace. My purpose is clear. 


Here's a link to the epic #ALSIceBucketChallenge from WPES:(ignore the name butchering)



Sunday, August 9, 2015


      I would hope that you've all seen an Ice Bucket Challenge by now with the 2015 campaign kicking off on August 1st. Many of you watched me dump ice over my head and then reach for a Guinness. The torch has already been passed to some of you. I know that the IBC may feel monotonous, worn out, a trend. Some may even feel like it's a money grab after you've already been incredibly gracious and have donated to one of the many ALS organizations or the Go Fund Me Account that was created for my family. I wanted to hit pause amongst all the social media noise about the Ice Bucket Challenge and explain why it's so important to me.
      I woke up this morning not because my alarm woke me up but because my left ankle was completely numb and needed to move to regain some circulation. I however can't move my leg on my own and would usually wake Michelle to do it for me but many mornings I don't wake her because she looks so pretty and has earned her rest, so I just lay there disgruntled and read the news on my phone. I can't get out of bed without her help. I can't get off my wheelchair and onto the toilet without her. There are days where I can't even wipe my own ass without her assistance. This morning I'm craving eggs and bacon for breakfast but I can't crack and stir the eggs. I can't grill the bacon because I've burned myself numerous times trying. My days of cooking are behind me (hobby #46 I can no longer do). I settle for a Clif Bar but those are in the cabinet so I have to get my portable arm reacher and awkwardly open the cabinet, knock over the Wheat Thins and graciously drop the bar into my lap. 
      Wrigley, my 8 month old pup is begging to play tug of war. He lays his toy in my lap prompting me to grab on and give a good tug. He might as well have been asking a 106 lady to do the same as I barely entertain him for 7 seconds. It's an iced coffee morning so I struggle mightily to get the ice from the fridge before I give up so that I don't fall out of my wheelchair. Yet another can't. 
      Off to church we go in the wheelchair accessible van that I can't drive but pull right into the shotgun spot and get my fix of sunflower seeds for the morning. I have to use my left hand to fill my mouth because when I use my weaker arm I get seeds everywhere. Once at church we post up in the back row, where the handicap accessible seating is, behind everyone and hope that if anyone sits in front of us they're the shorties of the congregation.
      I could continue on about the many things I struggle with on a daily basis that I had always taken for granted. Maybe I'll share in the next blog. As it goes, this is why the Ice Bucket Challenge is so important to me. My doctors and researchers we've spoken to have no answers for Michelle and I. There isn't a lot of hope out there besides staying steadfast in my faith. But with the sharing and fun there is to be had with the IBC we are building a larger and larger community support system for those who are afflicted with this terrible disease. Our Hope Tank fills when we see our friends, family and celebrities spread awareness to possibly someone who hasn't heard of ALS and that person may help provide the means to finding a cure. It might not get done in time to save me, but I'm confident the Ice Bucket Challenge will save ALS patients in the near future. 
I can find Grace in that. 

Sunday, July 26, 2015

White Sox Class

      Cue the theme song from Chariots of Fire. Now that you've got that epic song in your minds you'll hear what I heard in my head last weekend when I went to Sox Park for a game with my buddies and a "surprise." Upon arrival, after VIP parking, Kamm, Brendan, Tim and I were brought into the stadium by our own PR escorts. They miked me up, where Kamm said, "you do know he's going to swear a lot," he was right, but they said they have good editors. 
      We waited a few minutes, giddy of what was to come. Jerry Reinsdorf strolled by, Harold Baines in his coaching gear, many player's wives, and then they escorted us out by the World Series monument. A few short moments later, cue the music, the 2005 World Series team walks out to join us by the monument. Brief back story, this is the team that almost cost Kamm and I a college degree. Back in the fall of '05 we boycotted class, homework, even tests when the Sox had a playoff game. One of the best decisions I ever made. The team took a dozen photos with the trophy before the WS MVP Jermaine Dye locks eyes on me. My face already hurts from smiling so much when he walks over, gets down on one knee and shakes my hand. He told me, "we've all heard you're our biggest fan, but we want you to know we think you're a hero," cue the music, when he hands me an '05 WS customized jersey with GRAHNKE across the back and insists I join the rest of the team and trophy for a picture. 
     Hundreds of pictures are being snapped, I told the guys I was worried I was going to swear, when Ozzie Guillen grabs my shoulders and says, "swearing, who the fuck cares?!? Fuckiodnbrbvv," that's how I would decipher what Ozzie said. The players dispersed but Jermaine held back and put the trophy on my chair and snapped a few more pictures. He then called over Frank Thomas. Frank is truly The Big Hurt, the man is massive but such a sweet guy. He and Jermaine grabbed a shoulder and we snapped a photo. That's when they turned the trophy over to my crew. They wanted me to hold the trophy but I was terrified my weakening arms would drop the WS trophy! I gave that honor to Kamm and then we took one of the happiest photos my wife said she thinks she's ever seen.
      On to Act 2. Our lovely PR team took us to the field through the clubhouse halls. Out on the field we listened to Rowand, Anderson, Blum and Ozzie speak to season ticket holders about '05. While they spoke we met the current White Sox RF Garcia. Another large dude, took a picture, got an autograph. Then, out of the dugout comes my dude Robin Ventura. We walk over to him where he shoots the shit with us. I told him of one of my most memorable games where he hit 2 home runs to win the game. Kamm complements his glasses. He told some jokes. Another awesome picture, another autograph, another manly and classy handshake. Cue the Sox players that just wrapped their interview. They come bear hug us and pull us in for more pictures. Ozzie talks fast and we lost track of his meaning, but who cares, the dude is so cool. Aaron Rowand gives me a little man shoulder massage, Brian Anderson complements my sunglasses.
      Act 3. We join Cate, Rosie, Logas, Halter, Joe and Paul in our suite to enjoy hot dogs and beers and take in the WS ceremony where we get another view of our '05 heroes. The videos on the jumbotron gave me chills. We relived every moment of the playoffs as the crowd roared. Kamm, Logas and I recall when the Sox won in '05 and I lead a screaming parade up and down the dorm halls. The day could have ended there and gone down in history as the best day ever right behind my wedding day, but it wasn't finished. 
      It's the top of the 4th inning, Sox are down when there is a knock at the door. In comes Jon Garland and Brian Anderson, as well as a camera crew. These two studs are here to hang out and have beers with us. Brian and Jon fold into our crew as if they've always known us. Jon and I talked about his daughter. Brian and I talk about hot dogs vs polish sausage. All the while they let me wear their WS rings on each hand. Eventually they had to split but not before taking some selfies with the crew and giving me a hug. We continued to party and enjoy the Sox all the way into the 13th inning.
      Now I know this experience would never have happened if I didn't have ALS. Jeff wouldn't have been able to tell the Sox much of a story if it weren't for this disease. As great as this day was, I'd trade it in a second if it meant I'd be healed. But right now the fact is I have ALS and it brought me one of the most epic days of all time. I'll be able to share this experience with my dad in heaven one day. My crew will remember this day for the rest of their lives. There's Grace in that. Cue the music.

Thursday, July 16, 2015


      There was a lot of drama attached to last night's Espy Awards and to be honest I didn't watch any of it. What I did watch was Stuart Scott's speech from last year's award show when he strongly and proudly discussed his mortality that he was soon to encounter due to his cancer. "When you die that doesn't mean you lost to cancer. You beat cancer by how you live, why you live and the manner in which you live." He delivered this quote with such poise that I remember yelling out, "hell yeah," and startling Michelle. I've been trying to live my life by this motto ever since I heard Stuart say it. I too am in a place where I have to face my mortality. ALS is terminal. Terminal doesn't mean I will stop swinging punches, even if my hands have trouble making fists. Terminal doesn't mean I will stop hugging and squeezing my nephews, even when my biceps are getting weaker. Terminal doesn't mean I will stop having fun. I won't give up on the White Sox. I won't stop drinking beer. I won't stop teaching. I won't stop being sarcastic and silly with people. I won't quit.
      I'm not going to lose to ALS, I've already won. I know Jesus died on the cross to save me from my sins which means I've already got my ticket punched for the greatest destination imaginable. Thus, I'm going to keep living my life in a manner that's worth fighting for, love those around me that give me strength, and praise God for the blessings he showers me with. 
      I encourage all of you to live this way too, regardless of what obstacles or disease you might be facing. Embrace the life you have and those around you, because we're winning.

Thursday, July 2, 2015


      People handle their time in different ways. The type A's of the world make sure their to-do lists are filled and there is always a plan. The procrastinators of the world always delay, delay, delay. I find that I fall somewhere in the middle. In grad school I would always put off work until the last second and then cram and that worked out well for me. When the weekend rolls around though I want plans, I don't want a moment of freedom to go to waste.
      Now that I know that I have ALS I see time in a whole new way. As I've said before in blog posts, life is finite. When we say, "how am I going to spend my time?" We need to remember that we really have no idea how much time we have, nor is it "ours." It's on loan from God to us and we're to make it as meaningful as possible in the amount we are allotted. 
      It's summer vacation, perks of being a teacher, and having all this time has been both a blessing and a curse. I've already had some impeccable times with friends and family, and been on adventures with more to come in the upcoming weeks. But I've also spent a lot of time dwelling on my diagnosis and pitying myself. I was living by the stupid YOLO lifestyle and indulging too much to try and block out the hand I was dealt. I strayed away from the safe and loving path where God, my friends and my family are to help make "my time" special and worthwhile. 
      Today I found grace when I spoke with 80 kids about the reality of this disease and how it impacts not only me but thousands of others. They welcomed me with open arms and are dedicated to raising money for ALS. They showed compassion, grace and humor. Time well spent. Grace refilled.

Tuesday, June 23, 2015


      Which one do you want to hear about first? The fight in middle school where I threw a kid into a locker for saying something stupid about my little sister? The one at the track meet where a guy in my relay team was being bullied incessantly and I couldn't take it anymore so I threw a haymaker at a guy 2x my size and ended up getting a busted up jaw? Or the many punches I threw in college when people got out of line around the people I called family? Some of those I won't get into details about because I don't know what the statute of limitations are. I'm not new to fights. 
      I was lucky enough to get some years in with my dad before things got hazy for him. He was able to pass along advice to me, advice that I still wear with honor today. Sometimes fighting is necessary. Don't fight for sport, or because you disagree, but when you're backed into a corner or the people you love are being hurt, fight.
      I'm fighting day in and day out for my life here. Anyone reading this knows the hardships I face on a daily basis. That's life now and I've accepted that. What I haven't accepted is the lack of support we get on a state and federal level. We patients with ALS (pals) get fed sappy story bullshit without enough follow through. People who can do something to improve our lives or even save them don't, and need to get their asses in gear. I also don't accept the "handicap accessible" culture we currently live in. I frequently deal with the hassle of community locations still having stairs, or faulty ramps, tiny hallways or dickheads using the wheelchair stalls when others are available. I've reached my tipping point, I feel backed into the corner, and I have an army that I know will stand and fight with me. I ask that you fight back for  me and for others that can't fight. Call and email state and federal reps and demand better services for pals. If that's intimidating at least fight back when you go to a business, restaurant or bar if the location is inaccessible, or looks like a place I'd struggle in, speak up to the person in charge. Fight, fight, fight. I'll have your back.

Friday, June 19, 2015


      We Midwesterners persevere through some terrible winters. Everything around us freezes. Our cars struggle to start, we bruise our butts falling on black ice, it's terrible. But then the spring comes. Our lawns begin to grow, flowers blossom, the trees get green again. I've been spending a lot of time on my deck lately. Michelle and I loved this deck in January and boy has it been a good investment come June. 
       With the terminal illness that I wake up to every morning I get pissed some days. Ask Michelle, many days the first word out of my mouth rhymes with truck. At the time I am so mad. Mad that I can't get out of bed by myself, mad I can't reach the cereal in the cabinet, mad I can't hop in the car and escape reality. When I'm smart I reach for my headphones and plug into music. Van Morrison, John Hiatt, Kid Cudi, Hillsong United and others help me stabilize and cope. Haters out there will tell me that I should bail on my faith right now with the cards I've been dealt. I may know I have a terminal illness but plenty of people are walking around without a clue of when their card will be pulled. I know mine will be pulled, but I don't know when. In a weird way with this knowledge I can see into the future. It's not a future where I can get amped about winning millions of dollars or make premptive investments, but I can see the importance of slowing life down and appreciating the little things. The smell of freshly cut grass, the cardinal that frequents my bird feeder, Wrigley's lovin', the cold beer in my hand, the sun setting in the west. I may not be able to predict the cards, and I may not like the hand, but the hand comes with so much to be thankful for. 
      Even when my strength is lost I'll praise you, I will always sing your praise, even when it makes no sense I'll sing your praise. 

Sunday, June 14, 2015

Thoughts from Michelle

As I see all of my Facebook friends posting pictures of weddings, engagements, and anniversaries. I realize just how special marriage is. After a year of planning for a beautiful wedding I learned quickly that marriage is work and love is a commitment between two people. Kris and I were married only 6 months when he was told he might have ALS (later confirmed.) Not only did I grow closer with my husband but my love for him grew stronger. I came to the realization that marriage is not about a fancy wedding, a house, or children. I learned it's about putting the other persons needs before your own. Everyday when I help Kris dress, bathe, or do daily activities I remember that marriage is about sacrificial love and that two people who marry each other should be willing to do anything for each other just as I will for him, and I know he would for me!

 My prayer is that all newly weds and newly engaged couples would share that selfless love with your spouses. Things don't always go as planned and the way YOU think your future should go. Stay firm in God's plan and the vows you said on your wedding day.  

Tuesday, June 9, 2015


       How many times has Batman saved the day? He's defeated some of the most ruthless bad guys movie goers have ever seen time and time again. As awesome as Batman is he can't come and save the day when my leg is locked up in bed and feels like someone has my knee in a vice at 3am. Batman can't come help me transfer to and from the couch when I want to be free of my wheelchair. Batman can't make sure a coffee cup is ready to go every morning at the Keurig, or that the lawn is mowed, groceries in the fridge, floors are vacuumed, oil is changed in the cars, the dog is fed and taken care of, the laundry is done. Batman can't help me get dressed and look awesome everyday. 
      Batman doesn't stand next to me at my weakest and make me feel as strong as Thor. Batman doesn't constantly motivate me to keep pushing, to keep fighting off the bullshit ALS deals us. Batman doesn't comfort me when I can't handle the pain this disease brings. Batman doesn't stay steadfast in faith to help build my preserverance and solidify my hope. Batman can't do any of these things, but Michelle can. Michelle is my hero. Michelle is who I look up to, who I strive to impress, who I idolize and respect. Michelle shows me such Grace that inspires me to be courageous, to be steadfast in Christ, and to keep fighting. 

She's the Best Thing. 

Tuesday, June 2, 2015

Cheers to Another Year

      Another school year has come to a close for Mr. Grahnke. That makes 6 but since I'm a Special Ed teacher it feels like 42 years (works like doggie years). This last year was out in Rockton, a place far different then my Hard Knock life in Berwyn. I didn't know what to expect when we made the move out to the Rockford area. We were leaving friends and my side of the family behind and walking away from jobs where people loved us. We were making this jump in the early diagnosis of ALS, where I was naive to just how much this was going to turn my world upside down. 
      My classroom at Whitman Post in Rockton consisted of students in 2nd-5th grade. Variety of disabilities, all different schedules and ability levels, the beginning of the year was madness. It was madness at home as well. Michelle and I were constantly trying to stay ahead of my ALS progression. It started with very minor adjustments here and there, to installing a ramp, shower chair, wheelchair shopping, to transfer boards. We even had to swap out our brand new Tempura-Pedic mattress, that wasn't even a year old, for the guest mattress to give me more support during transfer and while sleeping. At this point in my progression I need a bed that can raise up and down to give me more support. At the moment I'm giving Michelle quite the tricep workout every morning when I need help to sit up. This race against ALS still takes place every day. We work with teams of people to keep my quality of life at a B+ or higher. There are excellent days and then there are days where Michelle can't help me do a thing because I'm too busy crying my eyes out and cursing God for this place I'm in.
      At Whitman Post the 5th grade classrooms each wear a shirt with the Superman logo on it, only the S is replaced by a 5th on the shield. I feel like Superman when I come to WPES. I get to tear off the suit of burden I carry when I can't do things on my own I once could, and throw the pissed off feelings to the side so I can do what God intended me to do. Teach. It's been a rough year, but with the support from my WPES family I've been able to be a superhero again, I've been able to help the kids that need it the most, I've been able to bring home a good attitude to my amazing wife and I've been able to witness tremendous amounts of Grace. 

DUDE. be nice.                   Gronks

Wednesday, May 27, 2015

The Deck

      ALS awareness month is wrapping up and I've got to admit I'm worried the craze and support we PALS have been receiving is going to cool off. Don't get me wrong, the support and outcry has been amazing, but don't get it twisted, we need the enthusiasm year round to push congress, drug companies, anyone with money to listen. That's frankly a thought that I just don't know how to squeeze into a blog post but felt like it had to be said.
      I've fully started using my power chair on a daily basis. This thing is awesome. I can drive off-road, Abram, my nephew loves rides. So is the van many of you helped Chelle and I buy so that I can get around and regain some normalcy. With that normalcy comes another ALS milestone. This chair has solidified that this speed demon won't be running anytime soon, or he at least won't be speeding the way he used to. Transferring to and from the toilet and shower chair has become a two person job, a decision that required falling flat on my face a few times. 
      I get so mad sometimes that I have to rely on Chelle to help me in the bathroom or pulling my pants up. I don't mess with the stove, too many burns to count. Cooking is something I loved doing and right now it seems like a lost art. I'll start swearing, cursing at silverware, iPhones, the mail, because the feeling of losing your independence is fucking terrible. I swore at the mailbox just a few minutes ago because I couldn't reach the mail at the back of the box.
      The deck, what perfect timing. The sun is out, the birds are singing, I've got chilled beers in the fridge. I took a deep breath, grabbed a cold one, started the iTunes playlist and stared at the beauty God created in my backyard. Chelle put together some burgers, the grill is going, Wrigley is hunting, what could be better? Not having ALS I suppose. But wishing for something I can't currently change gets me nowhere. I can however find Grace in the beauty I see in my wife's eyes, the barley in my cold beer, the dove's song, the smell of melted cheddar cheese on top of a burger, Grace that I'm still here and have so much to be thankful for.

Wednesday, May 13, 2015


      Michelle and I just got home from our trip to Washigton DC for National ALS Advocacy Day. 700+ caregivers, family members and friends came out with 130 men and women with ALS to stand up and talk with our government officials on Capitol Hill. The majority of us stayed at the JW Marriott in DC. It was a madhouse there, in a good way. Many of us zipping around in wheelchairs, hoggin elevators and taking over the bar. This trip really intimidated me, but now that it's come to an end I'm ready to fight even harder than before to beat ALS.
      I'm one of only a few people in the Rockford area to have ALS and at the moment the youngest for sure. It's incredibly isolating to be one of the only people fighting this battle in an area. Being in DC this weekend allowed me to meet guys just like me that have to battle this shitty disease everyday as well. Pat Quinn, who started the Ice Bucket Challenge and who loves baseball, just like me. Jay Smith, a music connoisseur from Austin, TX who relies heavily on music to cope, just like me. Tim Shaw, ex-NFL star who is always up for a good time and has a few speeding tickets on his record, just like me. Justin Dodson, an Iraq vet from Chicago, who doesn't mind cursing on Capitol Hill, just like me. And many other guys and gals that might be older than me or have nothing really in common with me, but who had awesome attitudes and strength that I look up to and can rely on whenever I need a pick-me-up.
      Not only did I meet awesome pALS (patients with ALS) this weekend, but amazing supporters from the Greater Chicago, St. Louis and Wisconsin area. Mike, Melissa, Amanda, Melanie, Sam, Bruno, Julie, Ann, Maryilene, the list goes on. All of these amazing people had some tie to the ALS community. They lost a friend, parent, sister, brother, or are just sick of losing people to this awful disease and are sick of the lack of support and treatment out there that they made it their calling to support the community. I had a blast taking on Capitol Hill, drinking beers, seeing the sights, and leaning on each other for support with these people this weekend. I made friends I'll have for life in these people.
      Michelle and I were able to see the sights together. The Washington monument, WWII monument, which was so cool, the reflecting pool, Lincoln of course, Vietnam monument and got within 4 blocks of The White House, someone important must have been there. We had dinner with an old friend at a DC institution, Old Ebbitt Grill, where I had fantastic crab cakes and a great beer or two from Atlas Brewery. The ALS Association took care of us and put us up in a beautiful room, made sure accommodations were there so I could use the shower and rented a fun scooter for me to get around way faster.
      The Hill. All the ALSA chapters hopped aboard buses for the Hill on Tuesday where we broke off into groups to talk with our senators, congressmen and representatives. My group had five meetings where we met with senators Durbin and Kirk, as well as congressmen Kinzinger, Dold and Ducksworth. We let them know the importance that they support the ALS Registry, designate another $10 million towards research, which is a pebble in the bucket, to support the Steve Gleason Act that guarantees that we have access to augmentive communication devices, and to inact the Dormant Therapies Act, which in a nutshell allows big pharm companies to reinvestigate treatment plans and drugs that have been shelved due to patent rules. If it gets through congress it will be huge for us! 
      Warriors are losing their ability to communicate, walk, hug their loved ones, breathe. Warriors are dying. That's flat out unacceptable. A man with ALS told me this weekend, "today is the worst I've ever felt, and the best I'll feel for the rest of my life." That sucks. That is unacceptable for far too many of us to feel that way every morning. Something must be done and you best believe a fire was lit under my ass to make an impact on this community, not just for my sake, but for all the warriors I met this weekend.


Thursday, May 7, 2015

Island Times

      I sprinted up the 186 steps at the mountain tower on Washington Island. Looked out and saw sailboats on the horizon and the foliage changing on the tree tops over on Rock Island. I leisurely walk back down those 186 steps and crack open a cold one at the bottom. Off to School House Beach where I tip toe across the rocky beach and take a head first plunge into the chilly, clear, harbor water and swim out to the orange raft. I pull myself up onto the raft and look back at the beach full of Islander's with umbrellas, coolers full of beer, fat dudes in bathing suits and kids building rock castles. My pale skin begins to burn so back into the chilled water I go. After a quick nap on the smooth rocks Kurt and I venture into the woods to throw the frisbee with Island Wheats in hand. We whip the disk in and out of trees, trying to run and not spill our beers. We're famished, it's time to get back to the cottage and max a sandwich. 
      I dream of the Island regularly. It's always been a home away from home for my family and the place I look forward to when the times are tough. Kurt and I scattered my fathers ashes up there, we have designated songs that we play from our iPhones when we're up there. John Hiatt and Van Morrison speak to you on the Island. Kurt even tattooed the Island on is ribs. 
      The Island doesn't change, and that's the beauty of it. I remember being shocked when Wi-Fi was added to the Dutch Mill and when a second gas station opened up. How I'm able to enjoy the Island has changed though. The days of me sprinting up the mountain tower stairs are non existent anymore. Tip toeing across the smooth stones at School House Beach won't be happening either. Baking myself on the orange raft and running through the forest, beer in hand, would be tricky. Coming to these realizations fucking suck. They suck. It's hard to put a positive spin on it because this place means so much to me. I've woken in the morning and just balled my eyes out because I hate this disease so much and am so damn mad that I can't do things I once was able to do. But where the hell does that get me? 
      Where I find Grace in this is that I was able to experience those wonderful times in the first place. My bond with my brother increased dramatically having our chats as we hit every side of the Island and had a Guinness at each point. I got to swim with Eliza, and anyone that has done this knows how much fun it is. I learned more from my Mom swinging on the swing at the Sunset than I did in any class. And the Island isn't going anywhere. I'll still be able to go up there and watch the sunset, sit in The Coop outside K.K. Fisk with Kurt and have a beer, grab a slice of pizza and watch the Robert Noble and the Washington steer into Detroit Harbor, and most importantly be with my family in the place we love the most. There's Grace in that. 
      Some day I'll join my dad up there. We'll be able to run those stairs and swim at School House together on the Island everyday with Jesus beside us. I can find Grace in that.

Wednesday, April 29, 2015

Your Hand in Mine

      We boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
      Those are words from our Pastor's newest sermon series called, Seasons of Hope. Those are words I envision seeing in a college football locker room, heck every time I read the world perseverance I think of Friday Night Lights or Rudy and want to go kick some ass. But I'm getting off track. Confidence, anticipation, expectation, faith, castle in the sky, these are all synonyms for hope. We tend to think that hope is something we control. Something we can will into existence by holding our breath, crossing our fingers, or wearing our lucky socks. The cynics of the world think the results of hoping for something is just coincidence. 
      If you know me you know that I was always the guy who "had it under control." Oldest brother complex, where I made sure everyone else was good, had exactly what they needed, whether it was by running errands for them, or calling ex-boyfriends and threatening their lives if they didn't leave the lady alone, I would handle it. Keyword, I. Dealing with my dad having Alzheimer's while I was a teenager didn't help that complex. I thought I needed to right the ship and keep it together for the family. Hoping things would change wasn't working, I didn't think praying was working, I kept trying to fix everything. 
      Fast forward to present day. After I received my diagnosis of ALS, this, "I've got this," mentality continued. I had built up more of a faith in God and trusted in him, but I really believed I could still manage this on my own, I tried my best to make things go my way.  Then I took a stumble, then a fall in the bathroom, then on the ice in -15 degree weather. Every time I fell and bust my shit I would end up on my back looking up at the sky or the ceiling. While I lay there cursing, waiting for help, I was looking exactly where I needed to be focused, where I needed to secure my life, not in me, but in God. My suffering produced perseverance; perseverance, character; and character, hope. Hope that I know that where I walk, God will walk with me, His Hand in Mine, I can let go and persevere. 

Friday, April 24, 2015


      My career has been rejuvenated at WPES this year. That doesn't mean I disliked my job in D98, but as the teachers know who still work there, there are a lot of expectations that I doubt even Superman could live up to. We've got quite a few expectations out in Rockton these days as well. Growth assessments, PARCC state assessments, individualized student plans, district assessments, behavior intervention plans, incentive parties, Aimsweb, the list go on. Meanwhile we are all expected to put on a friendly face, act as if we aren't overwhelmed and "roll with it." 
      Scott makes it easy to roll with it. Scott is my principal. He always has your back. He won't kill you when you royally screw up, even when it makes him look bad. He'll listen when you have to just plain bitch because you don't think anyone else will understand the frustrations you have. He'll step in between you and a parent and take the weight off your shoulders. 
      I find Grace in knowing Scott. I was honest about my diagnosis of ALS with Scott before I was honest with some of my family members. He brought me in to a close knit community that I at first didn't feel worthy to be a part of. He let me park where I wanted, pimped out the restroom, spoke to board members about accessibility, the man had and still has my back. He helped me feel accepted when I felt like an outcast. Encouraged me when I felt low. He helps keep the normalcy that I greatly seek in all of this as I mentioned in my last post.
      I find Grace in knowing that I have him as a warrior in this battle.


Saturday, April 18, 2015


      The beauty of living so close to The Chi is that my friends can come spend the weekend with me on a whim. It's an escape for them and a relief for me. I spent Friday under the stars on the deck with Rosie, Wrigley, a 6er and a pizza. We reminisced on failed relationships from high school, drunken adventures in Forest Park and moments that made us who we are. Once it got too cold to bear we went inside and binge watched The Office just like we would have in high school. We polished off a bag of chips, the cold pizza and hit hay.
      My boy Kamm, and Emily came out in the afternoon on Saturday. We went up to the grocery store for some essentials, mainly some Shandy's, and then went back to the deck yet again. We jammed out to some tunes, knocked back a few, told some jokes, reminisced again. Then the Rockford Speedway took off in full form. Thanks to the southwest winds it sounded like the drag strip was in my backyard. This didn't slow us down. We headed for the front yard. In the front yard we picked up where we left off. Tunes back on, beers back on ice. This is when I started to joke that Emily should give my power chair a spin. I'm incredibly grateful that I have the insurance to cover such a great accommodation, but at the same time I can't lie, the thing scares me. It makes me think about the future when I might not be able to push myself in the manual chair. Emily cruised for a bit, but then Kamm asked for the reigns. Once he got behind the wheel all goofiness ensued. He was off-roading the thing, "threading the needle," drag racing passing cars, pushing it to the limit. He turned to me and said , "the boss should be behind the reigns." We switched rides. Mark to the manual, I to the motor, and tore up the driveway. I tore off up the street and stared up at the sky thanking God for the fun and support my friends gave me this weekend. All the while I wanted the evening to continue forever because I can't help but feel that my days are fleeting. I know this feeling gets me nowhere but it's hard to block out sometimes. The grass has wheel marks that will fade, my manual chair is dinged up from off-roading, my hands are dirty from gripping the tires. 
      The normalcy my friends, family, and Michelle show me is where I find Grace. ALS or not, the time I spent with Rosie, Kamm, Emily and Chelle can't be taken away from me. I'll let the picture do the talking for me. It's simple. I found God's Grace today. 

Tuesday, April 14, 2015

God Rocks My Socks

      I started this morning by pulling a shirt out from the back of the closet. I hadn't worn it all school year, but for some reason the shirt was calling to me. This shirt gave me a hard time. The buttons were like stringing a needle with a hair, every button was harder than the next. This could be because the shirt sucks, my theory, or it could be that I don't have the finger dexterity I used to. Either way, it was an annoying start. Then, I started putting my shoes on. All was well, no ninja moves needed to get the socks on, both shoes on, went to tie them but I forgot to put on my wheelchair brakes. The physics behind what I did are baffling, but I managed to launch myself head first into the closet, thankfully into Michelle's large collection of shoes to break my fall. I was a freaking mess dude, I'm face first in a pile of shoes, cursing like a sailor, when God intervenes, gives Michelle the super strength she needs to help lift me back up and into the wheelchair and off we go to school. 
      People ask me how can I keep my faith in God when he is letting such a shitty thing happen to me? I've got many thoughts on just how inaccurate this question is in itself, but I let them know that I'm not always on speaking terms with the guy upstairs. I've flipped him the bird and yelled things at him that if my Grandma heard me she'd hit me. But even after that, God fires love at me in such monumental ways that there's just no arguing that praising him even in hard times is the thing to do.
      Co-workers at WPES kicked off a GoFundMe page to help me reach a money goal that would help us buy a wheelchair accessible van that I could drive even in my wheelchair. These gifts will give me a chunk of my independence back that I lost and take a burden off of Michelle. The GoFundMe page hasn't even been up for a day and you guys have already blown away what I could have hoped for. God's love has poured over me through your kind words, hilarious jokes, memories that had slipped my mind until today, my face hurts because I've been smiling so much. The money being raised on this site is truly awesome, but the love that is being poured out, and me knowing that I have this ARMY of supporters behind me makes me freaking extatic and humbled all at the same time. 
      Better believe I will be giving the glory up to God this evening before I go to sleep. Pray about everything, worry about nothing. 

                                                                                                                         I love you guys,

Sunday, April 12, 2015

Opening Day

      Many of my fondest memories are linked to baseball. I came out of the womb and within minutes was in White Sox gear thanks to my dad. From a very young age I was taught to support the South side, the Bad Guys in Black, the Tough Chicago baseball team, the White Sox. Now before you go getting pissy about how I'm taking shots at the Cubs, or tell me how their young studs are really going to do something this year, save it, and talk to me in October. I'm willing to do a winning percentage beer case with any takers. I'm getting off track, I can still remember going to a Sox game with my dad where they played the Blue Jays. We drove up to the stadium, parked blocks away to dodge the parking lot fee and popped into an Irish dive bar just north of the park for hot dogs, chips and Pepsi to dodge paying a fortune for ball park food. The game was an all offensive show even with Jack McDowell on the mound. We had the lead, we lost the lead, it was a roller coaster for a young fan. It rained off and on, and I remember my dad laughing at the wusses who took shelter with every drop that fell from the sky. Then, late in the game, my hero at the time, Robin Ventura stepped to the plate with the bases loaded. It was my first game watching him play in person and I remember thinking I could "will" these guys into getting hits because I was there to see it happen. That will worked as Ventura crushed a grand slam that gave us the lead and ultimately the win. 
      I went off to college in the fall of 2005. As my fellow Sox fans know this was an exciting time on the South side. Led by Buehrle, Konerko, Dye, Scotty Pods and many other studs the Sox were going full steam into the playoffs with their eyes set on the World Series. Biotechnology, Psychology 101, my other freshman courses took a backseat for every playoff game. Even academic probation did not stop me from watching these games. Zach, Logas, Kamm and I would post up in my dorm room and watch every inning with sheer excitement for the following game as we inched closer and closer to World Series royalty. The White Sox ended up sweeping the Astros bringing the trophy back to the South side after 88 years. This championship meant the world to me, it meant the world to the Grahnke's, they won one just in time for my dad. 
      Baseball is a part of me. It's made me laugh, it's made me cry, it's made me jump for joy and lead a pack of wild and drunken fans screaming down dorm hallways. I know statistics of players that haven't played in a decade, names of players that played decades before I was even alive, there's no other sport, hell, interest that compares to the importance of baseball, the White Sox especially, to me. Going to games won't be the same these days. I used to hop on the Green Line with my dudes at a moments notice and head out to games. We would pool our funds and buy killer tickets as close to the field as possible. I'm not going to be able to do that anymore. The L isn't as convenient when you're in a wheelchair. I've talked about being at ass height with people before and the L sure as hell isn't a place you want to be at ass height. Sitting right behind home plate, or in left field by the bullpen won't happen either due to all the stairs and stadium seats. 
      Having a catch in the driveway won't be the same. I don't have the cannon for an arm that I used to, I can't make a running catch, run the bases or take cracks with the Louisville Slugger. Accommodations can be made, but it's not the same. These struggles suck, I hate them, they bring tears to my eyes just thinking about it. I find Grace in my buddies around me. Kamm, Danny, Kurt, Logas, Adam, the list go on, guys and gals that don't let my disease get in the way, that will get my ass into Sox games and into accessible seats, houses without ramps and bars at all costs. My army of family and friends are strong when I can't be, stealthily helping when I bullishly refuse it, and loving when I need a pick-me-up. The extravagant Grace I receive from the people I love make me full and in control and I am eternally grateful for that.

                                                                                                                   Go Sox!

Thursday, April 9, 2015


    Which experience sounds more enjoyable: Constant muscle twitching throughout your entire body or Charley Horse cramps every night when you are sleeping? What if I told you you could have both? Wouldn't you be so excited? I had and still do have these symptoms. The muscle twitching, or fasciculations as my Dr. refers to them, started in my legs. After I would go for a run or lift at the gym my legs would spazz out. They would twitch, pulse, even twerk. When I hit the hay in the evenings I would wake up in the middle of the night with extreme Charley Horses. So freaking painful. I remember punching myself in the leg trying to make them stop. The fasciculations were my motor neurons over firing and trying extra hard to send signals to my muscles that normally would get through without ever noticing. Mine were shutting down.
       We tried everything for the muscle cramping. Weird oils and lotions, banana after banana after banana, Gatorade before bed, drinking a cows worth of milk. As I said, the cramping happened mostly at night but sometimes happened in other places as well. My legs tensed up when I was driving once and I had to pull off the road onto someone's lawn. Once my right leg cramped while I was running on a treadmill and only thanks to my ninja skills did I avoid busting my shit and having a wicked face burn from the tread. Even with all of these problems I was too stubborn to go get checked out. I'd like to say I could feel that something more major was wrong and that's why I didn't want to go to the Dr., because then all this BS would be real, maybe I'm giving myself too much credit.
       Finding Grace in painful cramps and terrible twitching is hard to do. Where I can find Grace is that there are medications that relieve this pain and decrease the muscle fasciculations. I pop three of those bad boys per day to aliviate the cramping and decrease the twitching. So if I ever shake your hand and my arm twitches you'll know why now. That is of course if I haven't had a venti triple espresso from Starbucks for breakfast. 

"The Lord will rescue me from every evil attack and will bring me safely to his heavenly kingdom. To him be glory for ever and ever." 2 Timothy 4:18


Monday, April 6, 2015

Gronks, 1, Socks, 0

      Today was laundry day, meaning all my Puma socks were in the hamper and the only socks I had left were the long black ones. This would be no big deal if my toes moved like everyone else's, if my ankles moved up and down when I told them to, but they don't. My feet move like a limp chew toy Wrigley tosses about in the living room. 
      So there I am, staring down those stupid socks like Ahab taking on Moby Dick, Seinfeld vs Newman, The Roadrunner vs The Coyote, or Ron Burgandy vs Wes Mantooth. Without any hesitation I grab the left one and wrangle it over my left toes, I start with my left foot because it still follows my commands more often and twist that thing over my heel making sure the heel pad goes where it's supposed to even though now it's on top of my foot. After some big deep breaths, relaxing thoughts, I grab the right sock, sling my right leg up on my lap and begin the fight. My foot is sweaty for some reason this morning making things a bit more difficult. Again, my toes don't move and my ankle doesn't move when I want them to. I challenge you to put a sock on when neither of these body parts cooperates. Back to the fight. I grunt, I curse a little bit as I yank that sock over my sweaty toes, the elastic isn't doing what it's supposed to as I reach my heel, my big toe is stuck so I've got to double back and untangle it. One more big breath out, and it's up. It was a stressful 4 minutes. 4 minutes isn't a long time to eat a sandwich, play Trivia Crack, but it is when you're putting on socks. 
      I definitely don't enjoy how much longer it takes everyday to get ready for work, but I remind myself that I am still able to get ready on my own and I am still able to go to a kick ass job everyday. I find Grace in being able to wear all my badass shoes again that I wasn't able to wear when I was "walking." Now in the wheelchair I can break out my Adidas, my Sperry's, my canvas kicks. Small victories, man, small victories. 

      Writing this blog means a lot to me and I thank you guys for all your kind and uplifting words. I'm glad you enjoy reading my writing. Stay tuned.


Friday, April 3, 2015

Hartnäckige Mann

      Have you ever slipped on a patch of ice and gone tumbling to the ground? You're immediately embarrassed, whether you are by yourself or with people. You quickly establish your balance, maybe laugh it off, even though your ass hurts like a mother, and you pick yourself back up. I experienced this feeling on a regular basis, only it wasn't ice that took me out, it was my own two feet. I fell in the kitchen, the grocery store, the parking lot, the park, at church, at work, the list goes on. Only when I fell I couldn't pop back up. 
      Hartnäckige Mann translates to "Stubborn Man," at least that's what Google says, my brother might dispute that. Anyways, anyone that knows me well or knows a Gotsch or Grahnke knows that we are a stubborn people. Friends joke that it's our German heritage that makes us stubborn, and it probably plays some role in it. My stubborn nature and oldest sibling psyche makes me a very determined person, many times to a fault. My nature is to help others in whatever way I can, make sure they're taken care of and then get my feelings and needs in check. 
      I fell when no one was around, I fell in front of strangers, I fell in front of friends. Every time I did I felt embarrassed. I would wave off help and try and muster up enough strength to push myself up. "I'm fine, I'm good, don't worry about me." The reality of the situation was I didn't have it under control, no matter how stubborn I was, no matter how much strength I had in my arms, I couldn't get it done. Sometimes I managed to get up on my own, other times I didn't. God was breaking through to me, when I would shout up at him, cursing at him, "help me the f*** out I would say in my head, sometimes out loud, he was answering my prayers by gracing me with help from others. The ever so wise Alfred from Batman said, "Why do we fall Master Bruce? It's so we learn how to pick ourselves back up." Or in my case it's so that I learn to trust in others and know that accepting help isn't a sign of weakness but wisdom.

      I find Grace in Michelle. Michelle has been here through all of this. When the doctors gave the diagnosis, when we were tricking out the house to make it more accessible, doing all of the laundry because the machines are in the basement. She's been there when I'm acting like a bull in a china shop, cursing out the Keurig when it doesn't function right and yelling at the cubburds when I can't reach something. Other young adults with ALS don't have this luxury. They don't have someone who loves them unconditionally. Someone who will provide subtle help so that my stubborn pride doesn't feel broken down. Someone to bring laughter to shitty situations. Is it a coincidence that Michelle's middle name is Grace? I don't think so.

      I hope everyone has a wonderful weekend celebrating the sacrifice Jesus made for us so that we could have the lives that we treasure so deeply. 
                                                                                                                 Love you guys,

Thursday, April 2, 2015

April of Last Year

      I'm on spring break at the moment with lots of time and coffee on my hands. Rather then binge watch episodes of The Office that I've already seen or watch repeat episodes of 19 Kids and Counting with Chelle I thought I should turn to writing.
      A whole hell of a lot has changed in my life in the last year. I changed jobs, moving on from my awesome Prairie Oak family where I came into my own as a teacher and made lifelong friends, to WPES where I have become family in such a short period of time that it feels like I've known these people for years. My love for teaching and advocating for kids with special needs has never been more charged. We moved from Elmhurst out to Roscoe for a few months where we rented an apartment from a bat shit crazy landlord as we scanned the area for a real place we could call home. After seeing 40+ properties with our realtor and nonsensical arguments with that landlord we found a house we could call home. I'm now proud to say I'm finally my own landlord and have a place of my own that Michelle, Wrigley and I can grow into and enjoy.
      April, 2014 shit hits the fan in terms of my health. At this point I'm starting to walk with a limp, running ain't happening, I had excruciating leg cramps at night that couldn't be cured with milk, water, Gatorade, or even mustard. I challenge you to eat a tablespoon of mustard without puking. So I go to see my first specialist. I had a bad vibe from this dude from the get go. His office smelled of old toothpaste, it was dark and dingy, bad vibes all around. He assessed my leg strength and within 20 minutes without any solace he dropped the bomb, "You have ALS sir." Remember the movie Saving a Private Ryan? The scene where Tom Hanks is taking cover on the beach of Normandy and everything goes into slow motion and the ear piercing buzz is rattling his brain, that's how I felt. Michelle and the Dr. kept talking but I heard nothing. Nothing until he asked, "do you have life insurance?" In my mind I was jumping across the Dr.'s desk and beating the crap out of this guy. I was mad at him, I couldn't believe he could say something like this to me, I blamed him. We left the office with information about tests we would need to do to try and confirm or disprove this diagnosis. We went back to our apartment where I drank right through a case of Sam Adams with a few close friends not knowing what to do or say so I just got hammered.
      A few days later I'm sitting in a hospital getting tased by a student doctor with an EMG (Electromyograph) test. This test assesses the health of your muscles and nerves but this dude is literally tasing me in different parts of my body. This test is usually just done in the hands to assess if you have carpal tunnel syndrome. The student doctor had no idea what he was doing and kept raising the shock power and hitting me with voltage in the neck, knees, elbows, etc. Those of you that know me, know that I use colorful language at times and I fired off some choice words at this rookie before he finally got his boss and he did it right. The CT scans followed. As did the X-Rays, cortisol tests, MRI's, bone scans, and enough blood was drawn to provide blood transfusions for all the kiddos in 19 Kids and Counting. I had to do a piss test where I carried around a brown jug to pee in and keep on ice for 48 hours. That one was probably my favorite. "Hey man, what's in the jug?" Have fun explaining that to people. Mind you I didn't do all of these tests only once, I did them two or three times between two different hospitals to get the second opinion on what was going on with me. Prior to this I had never set foot in a real hospital, I'd go to the Dr. every year or so, get a basic checkup, turn and cough (dudes you know what I'm talking about). This flat out sucked. The uncertainty of what was wrong with me wore Michelle and I out. We spent way too much time hitting the refresh button on our Loyola healthcare app waiting on test results, praying something would come back conclusive that said it wasn't ALS. It didn't. The final test I did at Loyola was the muscle and nerve biopsy. I had to be put under anesthesia, which I had never done before, and then have a small piece of muscle and nerve removed from my leg to see if what was going on with me was degenerative or causation by something internal. I woke up, had a wicked scar on my leg that looked like a shark bit my calf, and the waiting on results began again.
       Smash cut to this morning. I'm not sitting in uncertainty, wondering, praying, begging, that I don't have ALS. I have an answer. It's not the answer I wanted but that's how life goes. We can make plans for our lives, we can pretend that we have control over what happens to us, but we don't. God is in control. God has answered my prayers. The haters out there will ask how I can keep faith when a God dealt me such a shitty hand. I've had those screaming sessions where I yell at God, used explicits that would fit right into a Tarantino movie. But God has also blessed me in so many ways that even with this diagnosis I have such an incredible life. I've found Grace in playing with my nephews. I've found Grace supporting my students with disabilities that have boulders stacked against them. I've found Grace in the bonds that I've made with my fellow teachers. I've found Grace in my wheelchair that allows me to make my own coffee, let the dog out, cruise the school hallways, go to the grocery store with Michelle. Just be me again. 

                                                                                                                      Love you guys,